MS - Its evolution

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hms1
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/17/2007 6:34 PM (GMT -6)   
The evolution of what I've been experiencing worries me because of the mystery.

I have decided to not use any of the interferons. the risk was too great for what could happen to me if I attenuated my immune system.
Being a part of studies was a risk I rejected when I learned that 2 people had died when when they were part of a study involving a 'cocktail' mixture of interferons. The progression of my MS has me on occasion excreting in my pants. I've learned to manage by being in-touch with what my body signals to me.
I have to admit that Lyrica is working to alleviate my pain and I don't need to take oxycodeine because of it, but its effect on my thinking (i.e., concentration) is the downside. I play online texas holdem poker and play chess online to monitor how my concentration is fairing. It's clearly been adversely effected. I asked my doctor what the end game is for people with MS and I get the story that we're all different and that MS will not kill me. So I did a websearch and have found that MS was listed as the cause of death in some peoples obituaries. It's not that I am a person with a negative disposition but I really want to know what I can expect in the future. MS has been like on-the-job training where I have to wait and see what happens. I really haven't found anything available that presents something in the form of the unvarnished truth. I can deal with the truth and hate the wait-and-see mode I find myself in. Constipation I now have means I have to take MiroLAX with a suppository. By not really having an encapsulating view of what the future may hold, there is something dishonest about the disease and that bugs me to no end. I've even been told that suicide is not uncommon for people with MS. Something I personally would never do if only for spite. I can understand how some people might get second order sick and tired of having MS with the problems it causes. You know... sick and tired of being sick and tired.

Is there anything at all that 'lays it ALL out'? I realize some of the possible things that could happen may not but so what?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/17/2007 10:14 PM (GMT -6)   

Hey Mike,

This is an interesting thread you have here.  I don't think the goal of interferons (or any treatment for MS) is to attenuate the immune system.  I agree that meds in general are very scary.  I think that in the case of MS, the goal is to balance the immune system and not to weaken it.  I have been on copaxone for over a year now.  My MS has slowed down and I am not showing any signs of a weakened immune system.  I am a teacher and I am exposed to countless germs via my little darlings.  I have yet to get even a cold this school year. 

I agree with you on the uncertain future part.  I also find that completely unnerving.  I hate that this disease robs you of your sense of self in the future.  I don't make long term plans.  I don't visualize where I will be in ten years.  People at work talk about when they plan on retiring and I know I cannot make those plans.  I want to work as long as possible but I work day to day without long range plans. 

My challenge now is to live with a positve attitude.  I count my blessings and I am grateful for what I do have.  I have changed my priorities.  I live in the moment.  I spend as much time with family and friends as I possibly can.  I am happy.  Life doesn't have to be perfect to be blessed and totally enjoyable. 

love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 8:52 AM (GMT -6)   
I can see your reasons for frustration. Ms is a frustrating disease. I have found in my own life though, that it has made me do what I was supposed to be doing anyway. Living each day, one day at a time. Noone knows how long they have. So the wisdom of not letting the sun go down on your wrath has only became more real to me. It has made my own perspective of life clearer.

I do not profess to enjoy the symptoms nor the fact that I may have to suffer convulsions, speechless times, or inability to walk. This only makes me enjoy being able to do it today more though.

I guess Ive felt all that your feeling at one time or another.

I agree with Gretchen about the interfuons and I'm also on copaxone without feeling as if my immune system has weakened at all.

thanks
Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 8:55 AM (GMT -6)   
Oh, one last thing...

Isn't refusing treatment going to put you back in with those 20yrs ago who didn't have any clue and not as much hope for a longer survival? Maybe not....but that is what came to mind.
Every day brings us closer to what we reach for .........in all things.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/18/2007 9:17 AM (GMT -6)   
For a person who likes to play poker, I think you're gambling with your future by refusing to take one of the drugs.  Avonex, Betaseron, and Rebif are indeed interferons, but Copaxone isn't, so that might be a choice. It appears that you're talking about Tysabri when you talk about the "cocktail..that killed some people...". Further investigation into what went wrong there suggests that at least one of the persons killed didn't have MS to begin with.
 
Nevertheless, the drugs DO what they're intended to do -- slow the progression of the disease, and reduce the severity or intensity of exacerbations. Since each exacerbation leads to greater disability, I believe I need to do whatever it takes to do just that..so I've been on Betaseron for nearly 15 years now, without any particular long-term negative side effects.
 
MS in itself will NOT kill you, unless you happen to have a very serious, very rare, virulent form of progressive MS. It doesn't sound like that's what you have, as that form doesn't take long to render a person unable to communicate.  When you see MS as a "cause of death" in an obituary, it's usually there out of laziness - -the person did have MS...but the cause of death is more likely something like pneumonia, or a kidney disorder, or some other problem -- these are all related to the person having had MS, but not specifically the cause of death.  These days, assuming a person is taking care of himself and monitoring his health situation carefully, and has a doctor willing to work with him, people live a LONG time with MS (mine was diagnosed 25 years ago, but probably really was lurking as much as 40 years ago), and do well.
 
MS can play with your emotions.  People commit suicide for all sorts of reasons, one of which is not understanding what their life situation is -- like, not fully understanding the ramifications of their chronic illness -- and so take their own life.  I'd hardly blame MS for that, as it happens with every chronic illness "out there", that people are diagnosed with.  MS can also cause depression, and a fatalist attitude: "since I have this chronic illness I may as well not do anything to alleviate it, and spend time looking for worse-case scenarios rather than what I can do to make my life better."  There are meds and sometimes simple counseling that can help with this, as well as doing internet searches to legitimate sites, like the National MS Society web pages, where information is presented in clear, logical, easy to understand ways, that might alleviate some of your fears.
 
Can MS lead to severe disability? Yes.  But the reason for the drugs is to try to postpone, or prolong that possibility, or if indeed it happens, to manage it better.  And severe disability is still LIFE. I have bladder and bowel problems, use a wheelchair for mobility -- yet live in my own home, manage my own affairs, travel, do some consulting work, cook, clean, tend my cats, work on my hobbies, keep my husband happy, do all those common things, just not in common ways. 
 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 12/18/2007 9:49 AM (GMT -6)   
Uppitycats said what I was trying to say. Years ago they didn't have these medicines to slow the progression. Therefore disibility was sooner and worse in many cases. Also all of the material Ive read has stated that life expectancy time has been lenghtened due to many things. One being the catheter. Another being the Ms treatments.

I read an update about tysabri this morning. It was when it was added to another medicine yes. 1 other medicine, not just a thrown together cocktail.

One other person has now died but they stated in the article that this person had a very very severe case of Chron's as well.



Kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


hms1
New Member


Date Joined Dec 2007
Total Posts : 12
   Posted 12/19/2007 10:38 PM (GMT -6)   
I am under the care of the University of Colorado Medical Center's neurology department. The central issue was to take interferons or copaxone. Several with MS have decided to take nothing (Avonex, Betaseron, Rebif or copaxone). Long term use of these, what I refer to as poisons (and my neurologist doesn't disagree), will cause problems after long term usage. So the central question is, do I just deal with symptoms as they crop up? For or me, was do I want to temporarily delay MS at the price of their use causing my death in time? The use of the interferons and copaxone are not without risk. There isn't even an assurance they'll actually work. But work how?

I'm not alone with my choice.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/20/2007 6:38 AM (GMT -6)   
One thing I know for certain. None of us get out of this life alive. There are lots of us who have been on the interferons for years...15 for me, I know folks on them for 20..with no "problems after long term usage", so I don't know what you're referring to. If you can site some sources, I'd be very interested. Thanks.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 12/20/2007 3:12 PM (GMT -6)   
I haven't seen anything either about long term usage and problems with the meds available.  It is however a personal choice whether to take the meds or not, and some people do chose not to take them for various reasons.  I have a good friend who was dx is 1984 and chose not to and does well without them but her MS doesn't seem to be progressing quickly.  She has been the same for years and I am happy that she is doing as well as she is. 
 
My DH is another story, undiagnosed for 14 years and by the time of his dx he was severely disabled.  Had he been diagnosed earlier and been put on meds would he be as disabled as he is now?  I really think it would have taken a lot longer because when he started  the meds he hasn't had any noticable progression.  It is a personal choice though, no meds are without risk, but for us it was a decision based on quality of life and trying something.  I can't imagine how he might be now if he was still on nothing.  With MS you just don't know what it's going to do.
 
Co-moderator for Multiple Sclerosis
 
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irishkitt
New Member


Date Joined Dec 2007
Total Posts : 9
   Posted 12/22/2007 9:13 PM (GMT -6)   

 HELLO,

I AM NEW, I MUST USE CAPS, I HAVE OPTIC NEURITIS

MY VISION IS BAD.

I AM A 49 YR OLD WOMEN, JUST DX IN MAY 2007

WITH MS. HAVE HAD TREMORS FOR MANYS YEAR.

ONLY ON MY LEFT SIDE, DID BUNCHES OF TESTS AND

AND IT IS MS. I AM GLAD I FOUND THIS FORUM.

I AM NOT TAKING ANY MEDS FOR MY MS, ONLY PAIN MEDS.

I CHOOSE NOT TO BECAUSE I HAD A BAD REACTION

TO ONE. I AM OFF MEDS SINCE SEPT. AND I AM DOING

WELL. THANK GOD.

JUST WANTED TO INTRODUCE MYSELF.

HAPPY HOLIDAYS TO YOU ALL

AND THANKS FOR LETTING ME JOIN.

:-) KITT

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/23/2007 5:23 AM (GMT -6)   
WELCOME TO THE BOARD! I'M GLAD YOU'RE IN REMISSION RIGHT NOW (WELL, EXCEPT FOR THE OPTIC NEURITIS!) I HOPE THE REMISSION LASTS A LONG TIME. TAKE CARE!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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